{"id":4507,"date":"2022-11-22T06:07:25","date_gmt":"2022-11-22T06:07:25","guid":{"rendered":"https:\/\/syncleadership.com\/?p=4507"},"modified":"2022-11-23T03:39:13","modified_gmt":"2022-11-23T03:39:13","slug":"the-unacknowledged-rollercoaster-of-being-disabled-led-jo-verrent","status":"publish","type":"post","link":"https:\/\/syncleadership.com\/fr\/the-unacknowledged-rollercoaster-of-being-disabled-led-jo-verrent\/","title":{"rendered":"The unacknowledged rollercoaster of being disabled-led: Jo Verrent"},"content":{"rendered":"
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Picture Credit: Kristin Kokkersvold<\/figcaption><\/figure>\n\n\n\n

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It\u2019s not enough for disabled people to make art, the context they make it in matters too. <\/p>\n<\/blockquote>\n\n\n\n

I\u2019m the director at an organisation called Unlimited which commissions disabled artists to create exceptional work. At Unlimited, we describe ourselves as \u2018disability led\u2019. That means our staff, our board, our core decision making processes are all made by people, groups and teams that are as a minimum 51% disabled people. <\/p>\n\n\n\n

We are proud, delighted and determined to be (and to stay) disabled led \u2013 it matters hugely. It\u2019s not enough for disabled people to make art, the context they make it in matters too. <\/p>\n\n\n\n

Any art making by disabled artists can, of course, be brilliant. Historically however there has been distortion, censorship, control and coercion within some contexts where disabled artists have made work \u2013 think of all the collections of work that exist from hospitals and asylums that are named after the doctors of patients. Where the artists are unknown, the doctors or institutions own the work, gain the credit and the cash. Think that\u2019s in the past? I can name a large number of directors, choreographers, curators and collectors who are non-disabled and still working from this model \u2013 all far more prominently acclaimed (and well paid) than the disabled people they collaborate with or whose work they benefit from.<\/p>\n\n\n\n

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But this isn\u2019t just about why it matters, it\u2019s about what it costs – not only in cash terms.<\/p>\n<\/blockquote>\n\n\n\n

But let\u2019s start with the money. We recently calculated that \u2018in the last six months alone Unlimited has spent over \u00a320k ensuring meetings and processes are accessible for our 93% disabled-led board and our 83% disabled-led staff\u2019<\/a>. That\u2019s \u00a320,000 more than an organisation that didn\u2019t involve disabled people would have to spend, and that\u2019s only half the year.<\/p>\n\n\n\n

And those access solutions don\u2019t just magically get put in place \u2013 there is labour in the determining, contracting, briefing and supporting access providers and organising other access support. The figure above doesn\u2019t include that labour.<\/p>\n\n\n\n

And there\u2019s more work internally too \u2013 such as ensuring the team all have access riders<\/a> if they need them and that they have space to adapt to what other team members need, or ensuring everyone who works with us has disability equality training so we share a common base level understanding and terminology.<\/p>\n\n\n\n

There\u2019s the work on policy adjustment. Most organisations don\u2019t really look in detail at how policies impact on disabled staff. We do. For example, at how in the UK sickness absence<\/a> policy terms and conditions are different from disability related absence<\/a> (which doesn\u2019t have to come from your sick leave allocation). We\u2019ve had to work through and improve our policy and to determine different levels for all our disabled staff. We take one policy a month – our expenses policy, our access policy, our data policy, our flexible working policy\u2026 basically all our policies need to be seen through a disability led lens and adjusted. <\/p>\n\n\n\n

All the above is easy to write about \u2013 the rest less so.<\/p>\n\n\n\n

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..It’s not the bruising interactions with external ableist structures, painful though they are, it\u2019s the cumulative impact of those interactions.<\/p>\n<\/blockquote>\n\n\n\n

Reflecting personally here, the biggest adjustments aren\u2019t the internal ones, they are taking our disabled-led organisation into the world and meeting the ableism of others, which I wrote about recently here<\/a>. And even then, it’s not the bruising interactions with external ableist structures, painful though they are, it\u2019s the cumulative impact of those interactions.<\/p>\n\n\n\n

It gets to me. It makes me doubt myself. The number of times one hits barriers, it would be easy to assume that \u2018they\u2019 are right and you are wrong. It starts to nag that surely if barriers should be removed and they aren\u2019t then it\u2019s because somehow, they are needed or necessary? Now intellectually I know that barriers exist because people setting up systems don\u2019t have the knowledge, time, resources or care to make them accessible. They don\u2019t think about it and they take short cuts. Often the damage they create isn\u2019t deliberate. Morally, and often legally (in the UK), I know that I am correct to push for reasonable adjustments, adaptation and change in line with the social model, to make the world more accessible to all. Emotionally, I start to internalise that feeling of being too much, asking for too much, being a burden.<\/p>\n\n\n\n

If I\u2019m already exhausted, this can quickly spiral into a \u2018I\u2019m not good enough\u2019 or \u2018I can\u2019t do this\u2019 narrative which can be damaging. And I\u2019ve never been more exhausted trying to run, let alone develop an organisation whilst the world burns around me.<\/p>\n\n\n\n

Austerity, a pandemic, war, a political system (UK and worldwide) in disarray, cost of living increases off the scale, reduced access to healthcare and access, energy crisis and so much more pile on top of each other making everyone scared, unsure and nervous. Add to that a label of \u2018clinically extremely vulnerable\u2019 to covid 19 (like myself and a number of my colleagues have), the UK\u2019s decision to forget covid is even here and just carry on \u2018as normal\u2019 despite raging numbers of both covid and those experiencing long covid symptoms, and perhaps it\u2019s easy to see where the exhaustion comes from. <\/p>\n\n\n\n

A salvation is finding comradeship within and amongst our disabled led peers and allies –  people who \u2018get it\u2019, places where I \u2013 and they \u2013 can take off the armour we need to work within the world and simply be without apology or excuse. <\/p>\n\n\n\n

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We see a mistake and we go for the attack, even with those in our tribe, often publicly calling out rather than privately calling in. <\/p>\n<\/blockquote>\n\n\n\n

Although even in those safe places, its sometimes impossible to truly relax and take all our guards down. We are human after all, and everyone is tired and taut. We see a mistake and we go for the attack, even with those in our tribe, often publicly calling out rather than privately calling in. It\u2019s easy to allow feelings of envy or jealousy to bleed into snide comments or backchat, especially when budgets and opportunities are squeezed and panic starts to rise. We set ourselves impossible standards \u2013 and we expect them of others too. Life is hard right now.<\/p>\n\n\n\n

I have to remind myself often to first be kind. This was something that previously would have been second nature but something the last three years seems to have stripped away, grating a slither more empathy off me with each new challenge to face.<\/p>\n\n\n\n

First be kind \u2013 as we never know what others are facing. Second be kind \u2013 especially to my disabled kin who are as exhausted as I am as we face more barriers now than ever, including the re-emergence of many we thought we\u2019d already removed. And third be kind \u2013 because it\u2019s the best, fastest and most positive way to make change in the world. <\/p>\n\n\n\n

It is always a choice. You can water the seeds of fear and anger if you want, but I want to choose to water the seeds of compassion, understanding and kindness where I can.<\/p>\n\n\n\n

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<\/p>","protected":false},"excerpt":{"rendered":"

It\u2019s not enough for disabled people to make art, the context they make it in matters too.  I\u2019m the director at an organisation called Unlimited which commissions disabled artists to create exceptional work. At Unlimited, we describe ourselves as \u2018disability led\u2019. That means our staff, our board, our core decision making processes are all made… Read more »<\/a><\/p>","protected":false},"author":17,"featured_media":4512,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[11,19],"tags":[],"class_list":["post-4507","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-leadership-thinking","category-think-sync"],"acf":[],"_links":{"self":[{"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/posts\/4507","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/users\/17"}],"replies":[{"embeddable":true,"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/comments?post=4507"}],"version-history":[{"count":12,"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/posts\/4507\/revisions"}],"predecessor-version":[{"id":4549,"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/posts\/4507\/revisions\/4549"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/media\/4512"}],"wp:attachment":[{"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/media?parent=4507"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/categories?post=4507"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/syncleadership.com\/fr\/wp-json\/wp\/v2\/tags?post=4507"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}